Thursday, October 23, 2008

ND...a very special program for a very special girl

So I just spent an hour writing a letter to someone I’ve never met, but that I was connected with because we have something in common…we both have a child with a speech delay. Those of you who have gotten my updates since we got married have heard all about Amanda’s adventuresJ…but if you haven’t, I thought it would be worth copy & pasting this so that you know a little of what we’re doing with her. If you know of someone who can benefit from this please feel free to pass it on…and send any questions my wayJ

I think the easiest thing is for me to just tell you a little bit of what happened with Amanda…

We started noticing a delay when Amanda was around 18 months old…but weren’t overly concerned. We had an assessment done by the speech therapist & she suggested that I take a class that taught the parents ways to encourage speech (instead of doing therapy with the child). She was 2 before this class ran, but I got some great tips…Manda’s words went from one word to about 5… but her delay continued. Between the time that she was just over 2 till she was about 3 ½ she had a hearing test done to rule that out (hearing fine, but more about that in a minute). She also had an assessment done for gross & fine motor skills….I highly doubted either of these was an issue, but we wanted to rule out something more “involved”. Also during this time she did a couple of rounds of speech therapy.

I found speech very overwhelming pretty much from the beginning. The therapist worked with her once a week & I was supposed to take “homework” to do with her…plus constantly “correcting” her (when she would attempt to say something I was supposed to put it into words so she could hear what it should be). With 3 kids 5 & under at this point I was maxed. I hated feeling like I always had to correct her. I didn’t fully realize till later what I was feeling…but I feel like I didn’t get to enjoy her in that year because I was always “getting after” her.

To talk briefly about apraxia because I know you mentioned it…the speech therapist gave me a bunch of “symptoms” to try & figure out it that’s what Manda had, but really no one knew. For a while she thought Manda did…and for a bit it was actually a relief to me because I felt like if something’s causing it then we can figure out how to attack it & fix it. Then it sunk in how long apraxia could affect her & I didn’t want to believe it. (In the end the ND said she doesn’t have apraxia…however they still could have helped her if she had.)

Allow me to switch stories for a moment…a few years before all of this my mom had started doing a neurodevelopmental program with my brother (11ish at the time) for some learning issues. He was behind socially & having a horrible time learning to read. I knew when my mom started this but I pretty my scoffed it (I’m ashamed to say)…because it didn’t make any sense. My brother did (among other things) these exercises on the floor…I’m sitting there wondering how on earth this is supposed to help him learn to read. As time passed my mom explained a bit more here & there of how it worked. I came to accept it for my brother…but when Amanda’s issues came up & my mom would say she wished she could do it with Amanda…I brushed it off. Then a day came when something hit me. For all of my brother’s life he had been my little brother…I the second mom (I’m 12 years older than him)…then one day I realized…I feel like now he’s my brother & we can be friends! It didn’t happen that suddenly, I know it happened over time, but I also know that he grew up about 3 years within a year or so & it did hit me that suddenly that wow, we can be friends! It was at that point I fully believed in what the program can do. I still however, didn’t see how it could help Amanda.

A while later (I can’t remember the time line of all this) I hit bottom with speech therapy. I was discouraged, hated not being able to enjoy my only daughter, hated making her feel like she did it all wrong, hated feeling like I was supposed to be doing this “24/7”…never doing it that much, but always having it hanging over my head…etc, etc. It was on this day that God brought to mind my brother & all my mom’s comments through the years…and suddenly it clicked. I realized (ie: God revealed) that this whole time with speech therapy we’d been dealing with the “symptoms”…just trying to teach her the sounds so she could communicate. But really we weren’t touching the cause of it all…no one really talked about that (other than mentioning apraxia at the beginning). I realized that the ND (neurodevelopement therapy) focused on the cause (more in a minute)…it went to the root of the problem & let it fix itself instead of trying to just patch the symptoms.

So what’s the cause? Here it is the way my simplistic brain can understand it…J All of our brains have many connections (no idea on the number…probably thousands…for sure hundreds)…from one area of the brain to the next, here to there, etc. Sometimes, for whatever reason, we don’t have all the right connections & it causes different issues…in Amanda’s case…speech delay. So what ND does is work at creating the missing brain connections. Don’t ask me how they know what to do to create the right connections…I just know they’ve studied it & it worksJ I called my mom, talked to her…talked to Ben…we decided to spend the money to help her…called the lady that my mom dealt with (Sylvia). At this point I had pretty much prepared myself to have to drive to Washington with Amanda to have her assessed. There are only a couple of these people in Canada (the one my mom dealt with is in Okotoks, but she’s not yet qualified to do the little kids). I called Sylvia…and she tells me that they’ve just finished arranging for Cyndi (one who’s qualified) to start coming to Okotoks twice a year to evaluate the little kids & I could book right away! Talk about God’s timingJ

We cancelled speech therapy & met with Cyndi for the first time in May 07 (Manda was 3 ½). I had questions, uncertainties, frustrations…but there were a couple of things that thrilled me the most. I was looking at having to work with Amanda ½ hour-45 min Mon-Fri (spread out throughout the day) and that was it! There wasn’t any of this 24/7 nonsense. To make that even better…in the list of things to do with her, there wasn’t even one thing that had anything to do with practicing talking! (Her program now has one thing where we practice “L” words, but that’s it) To make it even better things that I knew were there, but never dreamed I could fix, they recognized & are now almost non-issues! (Sever nail biting, super sensitive skin, super sensitive to hair brushing to list a few)

I said I’d write more about the hearing test. I found out from Cyndi, that an audiologist can say a child’s hearing is fine, but they can still have issues. Amanda can hear…but she can’t hear certain tones (she can’t necessarily tell how close someone is, that kind of thing) which affects speech. They test this with a special hearing test called a tympanogram.

The way their program works is that the child is reassessed every 4 months…at this point Cyndi only comes to Canada twice a year so that’s what it is for Amanda. She has had 2 re-assessments since that first one & both times they’ve noticed big improvements (behavioral & speech gains…despite not practicing speech!). Those are very important because although we usually notice a bit of change each time, most of it is so gradual that we don’t see it till we talk to Cyndi & she says, “What about this….is she still doing that?” And we realize…no she stopped (or vice versa)! Now I know you’re thinking that obviously a child is going to grow & change in 6 months….please believe me when I say that she progressed way more than is normal in a 6 month period!

Basically I would say that yes, it’s expensive. If there’s any way you can afford it…is it worth it? Absolutely! If you decide to go ahead & have questions (or don’t go ahead & have questionsJ) please feel free to email me!!! If I had not had my mom here who had done it before I don’t know if I would have continued…there were times when I was frustrated…but it makes all the difference to be able to talk to someone who’s been there!

One last thing to clarify…we’re not doing this with Amanda because she’s not good enough or we don’t love her the way she is!! On the contrary…we believe that God has great things in store for our Amanda Ruth & we’re going to do our part to make sure that she can live that out to the fullest!

Here’s the link to the website for the organization that we’re dealing with: (Very briefly about this organization…it’s a Christian organization…I went with it because my mom had researched extensively when she started with my brother (more on that later) & ended up saying there weren’t even any of the other Christian ones that she “liked”…she had very specific reasons, but I can’t remember what right now)

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